Turk Talk

All of your comments and well wishes for Jackie! made me cry. Thank you so much for caring about my friend! I don't know if any of you saw, but not only did Jackie! read every comment but she left one of her own thanking everyone. I remember how overwhelmed and uplifted I felt when I'd hear that people I didn't know were praying for me and Maddie. The kindness of strangers is a fabulous thing. I am deeply grateful to you all.

I spoke with Jackie! today. She is consulting with a neurosurgeon (heretofore known as McDreamy, because I am unoriginal) and getting lots of opinions on what the next step should be. She's in great hands (don't say "that's what she said!"). Mike, Maddie, and I have previously-planned trips to the SF Bay area scheduled for next weekend and July 16th - 20th. I don't know how she'll manage to squeeze us in, because it sounded like she was in the middle of a party when I spoke with her. Everyone loves Jackie! I am really looking forward to getting some face time with her.

It was so great to hear Jackie's! voice. I asked her how she was doing, and she said, "Well, I have a lot on my mind." This is why Jackie! is awesome!!! I told her I am totally stealing that joke if I ever have a brain tumor. We decided that she should start a blog, and threw out possible names like, "Got Tumor?" or "Tumor Talk" or "Notes From Turk." Oh yeah, did I forget to mention that her tumor has a name? It's Turk. We hate Turk. She also told me that having a seizure at work is a sure-fire way to make sure HR doesn't give you crap about going on disability. That Jackie! Always planning ahead.

If it's okay with her, I will post Jackie! updates on here from time to time. Like she said, the more prayers the better. I'm still trying to convince her to start her own blog, "Brain Warts." Man, I need to work on my titles. "Turk on my Mind," maybe? Jackie?! Have I convinced you yet?

In An Instant

I've talked a bit about my friend Jackie. We met in college...I don't remember actually meeting her, though, now that I think about it. I just knew her. We spent hours procrastinating in college. She was the only other person I knew that would wait until eight hours before her paper was due to start writing (and also got As on said papers, thankyouverymuch). We lived together at the beach for years after we graduated and had many adventures, some we remember and some we don't. We would watch American Idol every week (OH Kelly Clarkson!) and roast marshmallows in our fake fireplace. She visited me in New York and taught me how to ice skate. When I was told I would miscarry Maddie, she comforted me when I cried, and when I was on bed rest she called me every day to make sure I was ok. She and her family put Maddie on every single prayer chain in the universe. She was one of my first friends to hold my little baby. She's a ball of fun, and in my mind, there is an exclamation point after her name. Jackie!

Last night I got a phone call from a different friend, the kind of phone call where you know the second you answer the phone that something is wrong. My first thought went to my pregnant friends, and I feared one of them was in premature labor. Instead she told me something completely and totally different.

Yesterday at work, Jackie had a seizure in the middle of a meeting. Tests have discovered a brain tumor. Doctors don't know if it's cancer or not. Brain tumor. I am looking at the words but they are hard to believe. She is in the hospital, and the doctors want to remove the tumor as soon as possible. Her parents cut a vacation to Sweden short to be with her. They get back tonight at seven. Once they're back, decisions will be made about treatments and surgery.

San Francisco has never felt so far away.

I don't belong to any churches or prayer groups. I'm just asking all of you to please pray/hope/send positive thoughts toward Jackie and her family. She's Hot Stuff On A Stick. My Monchichi, Cha Cha, Jack Attack, and about a billion other ridiculous names. Leave her well wishes - she reads this blog and I feel like giving her prayers is all I can do from way down here in LA.

She is the kind of friend everyone wants to be, and few are lucky enough to have.

The Birth and Triumph of Madeline Alice

Two mornings after Madeline was born, I was in a hospital room on the general patient floor, shivering. I'd checked out against medical advice the night before because my husband called to say our baby was dying. I'd only seen her for a second, and I couldn't let her pass without me. She stabilized after I arrived at the hospital she'd been transferred to (the one I'd delivered at didn't have the high-level NICU she required), and it was only then I let myself feel the physical pain that came with an emergency c-section after ten weeks of bed rest. I had to go back to the hospital for pain management and observation. Unfortunately, for reasons still unknown to me, I couldn't return to the postpartum wing.

The nurses on the general level were not prepared for a woman in my condition. When I buzzed for pain medicine, it took them 45 minutes to respond. A nun who came to bless me (it's a Catholic hospital) got more than she bargained for when I burst into tears and asked her to pray for my baby. Even if I hadn't gotten the call, I knew I couldn't stay on that floor any longer.

I was forcing myself to walk, so I could start the healing process and be well enough to go to Madeline's hospital. My mom, who was with me, had left my room to find a nurse about those pain meds. My cell phone rang, and it was Mike:

Heather. When are you coming? The doctors said Madeline isn't going to make it. Babies with her problems rarely come back. Are you coming?

I hung up with him and said to the emptiness, today is the day my baby dies...soon I will no longer be a mother. I decided she would be buried with my grandmother, her namesake. I finalized her funeral in those moments I was alone, the moments that felt like hours.

My OB discharged me, and as I stumbled past her she said, "if you don't need to breast feed, bind your chest and use ice packs." Her words were ice cold, cutting through me. So thoughtless and uncaring, but they made me feel when I had been so numb.

My memory of the four mile car ride to the hospital is lost, but I remember arriving. My mom had to drop me off to park her car, so I had to make my way to the NICU alone. It was the most I'd walked in ten weeks, but I was determined to ignore the pulling of my incision and the bleeding in my uterus. I brushed by my in-laws and walked right into the NICU to my daughter's isolette. I stood next to my husband and took his hand. I didn't expect to see my little daughter alive. I felt heavy. I wondered if I would sob.

She didn't look tiny. Her body was swollen from the medications pumped into her bloodstream through what remained of her umbilical cord. I stared at her cord and cursed my body for failing her. I prayed my husband would forgive me.

The nurses and doctors spoke to me, but all I could hear was the hum of the high frequency oscillator giving her 500 breaths per minute, and the alarms. The alarms that meant she was dying. I looked around, and all I saw were faces. All looking at us, but none making eye contact. They all knew she was going to die. The other parents were told leave the NICU. Never a good sign.

The night before, I'd been told not to speak to Madeline because preemies can't handle too much stimulus. That morning, I didn't care. I started whispering to her, even though I was far away.

Mommy's here, Maddie. Please be strong. You can do this. You are the bravest person I know. Please be strong for your mommy. She needs you.

Mike and I stood there for moments, hours, minutes. Her vital numbers improved. The doctors and nurses heaved sighs and sat, exhausted. The other parents trickled back in. We didn't dare hope, we kept holding our breath. Six months later, we still haven't exhaled.

The internet is so amazing, the endless possibilities at your fingertips. Once I had a name for the reason I was on bed rest, I spent the remainder of my pregnancy with my hands on the keyboard. I sought answers, odds, and facts before Madeline was born. After her birth, I needed stories. I needed to know how people got through it. That's when I found a whole community of women grappling with loss and the fear of the unknown.

Many of the sites I visit have experienced the loss that slipped through our fingers. I was commenting on one today, and I was struggling to find the right words. I sat back for a moment and tried to consider why I was compelled to comment in the first place. Her words were beautiful and moving, why did I think that I, as the mother of a survivor, could say anything that would make her feel better? Yet, her story was haunting. It was almost me. But it wasn't. By some miracle, my baby survived. Why was I the lucky one? Why not her? I realized then I have major survivor guilt.

I'm writing all this because, as time stretches on, the details of those early days and weeks get dim. I never want to relive that fear, but I never want to forget it. Not that I ever could. I also hope that revisiting this will help me deal with the guilt I feel. The world is so random. I will never know why our baby survived where others don't. I can't change the outcome but I hope that I can comfort those who suffer. I ache for them. I touched their loss. I briefly let it envelop me when I walked into the NICU on the day my baby was supposed to die.

I will try not to feel guilty anymore.

Why the hospital sucked (besides the obvious)

We had a variety of Maddie-related tasks to do today - prescriptions, follow-up appointments & consults, and lessons on how to mix her medications - so when I woke up this morning feeling like my appendages weighed 1,000 pounds each I knew it would be a long day. I had a physical therapy appointment at 7am with a different therapist than usual. She couldn't believe all the knots in my back and neck. In fact, we spent the entire session with her working on my knots, and she still didn't clear all of them. Luckily my regular therapist had filled her in on Maddie so she didn't think I was a total stress case. I could use about eight more sessions tomorrow alone!

When we followed up with Maddie's pediatrician (loooove) today. I laid it all out for her. I told her all about Dr. Lung ordering oxygen before the oxygenation test, how she never kept us in the loop on anything, and how she was always being secretive around us. Her pediatrician (loooove) was pretty appalled, but assured us that Dr. Lung is the best around. She also said that if I ever have questions or doubts about something Dr. Lung is doing, I should call her and she will act as our go-between. I loooove her pediatrician so much, I didn't even take it personally when she said to me, "you look terrible. You need to get some sleep. A lot of sleep." Yeah, I had big bags under my eyes. I guess I should have worn makeup today. And brushed my hair. And not worn a jacket with dried spit up on it. Mike is so glad he married someone so sexy.

After I told Maddie's pediatrician (loooove) about my concerns regarding Dr. Lung, she asked how staying in the Westwood hospital was. I opened my mouth to really let it rip, then thought better of it and said, "well, it's a lot different than Santa Monica. Or even the NICU." She laughed and said, "I know what you mean, you don't have to feel bad. I try not to send my patients there unless it's absolutely necessary." The problem with the Westwood hospital is that it isn't supposed to be in use anymore.

A brand-new hospital is standing across the street, empty. I think the first scheduled time for the hospital to move was in 2006. The date keeps getting pushed back because of construction delays, equipment problems, and pipes breaking. The nurses joke that the new building is cursed. The new hospital is supposed to be AMAZING. All state of the art. Every room is private - no matter how much you like your roommate, it's hard to make decisions about your child's health with a stranger listening in - so that's great. I spent a lot of time this last week fantasizing about the new hospital. I have a crush on it.

Since, at any given time, the move to the new hospital is only a month away, the current hospital has gotten quite run down. All the important stuff works, of course. But it's worn out. I'd notice that the portible x-ray machines had duct tape up the sides. If a television a room stopped working, that was it. It wasn't going to be replaced since, in theory, it wasn't going to be needed for much longer. The paint on the walls is peeling, the floor tiles are cracked, and lights are flickering. I joked with the roommate's dad that if UCLA medical center was ranked third in the nation, I wouldn't want to see the hospital that was ranked fourth (and, while I fully disclose that Mike, Maddie's roommate's dad and I all went to USC, this isn't Bruin bashing)! Cleveland Clinic is ranked fourth, in case you were wondering.

All that being said, the most important thing in a hospital is the people who work there. The nurses, doctors, and students work really hard to make everyone healthy again. As much as we complained about things falling apart in our room, we were extremely thankful that so many people cared about Maddie and saw to it that she went home well. We were soooo spoiled by the NICU. We now realize just how amazing the NICU staff is (and we already thought they were awesome), and how lucky we were that Maddie got a bed there when she was born.

For a million reasons, I hope Maddie never has to go back to that hospital. Of course, if she does, at least we can enjoy the cafeteria. Every month there is a different theme of music playing. In November, when Maddie first arrived in the NICU, it was all Michael Jackson. This month it was 70's funk. The food there is actually really good. Yummy chicken sandwiches, fresh grilled cheese, and an honest-to-goodness sushi bar. Mmm...I'm dreaming of the shrimp tempura roll right now.

The Trickery of Dr. Lung

Sleep wasn't much of an option for me last night thanks to a few factors. The first was Maddie's oxygenation study. I was determined everything would read correctly, so I was up constantly making sure the monitor was reading correctly. I don't think I've checked on her breathing more since the first night she came home from the hospital. The monitor malfunctioned about four times during the night...I thought I was going to go insane. Alarms would start going off as if her heart stopped beating. They are so loud, I jumped out of my skin every time. The good news is, when the monitor was working correctly, her saturation was in the 90's.

The other reason I didn't sleep well was thanks to our new roommates. A four month old boy was brought over from the Pediatric ICU, and his mom was not happy about it. She didn't like that she'd have to stay with her son all the time, since in ICU, the nurses provide all the care. Before he was moved, she and the baby's grandmother came over to check out the room, and they pretty much freaked out by how laid back things are on the floor. The mom told the grandmother that she'd have to stay with the baby because she 'wasn't prepared to.' The grandmother was easily 76. Once he was brought in, the grandmother was totally overwhelmed. At one point, his medicine pump was beeping, and not only could she not hear it, she didn't know that a beeping machine was a bad thing. It was a mixed blessing when the mom stormed in at midnight with a big suitcase and an even bigger chip on her shoulder. I felt so bad for the nurse we were sharing. She had to do everything for the boy. I was up feeding Maddie, and he started to cry. The mom heaved a huge sigh, got out of bed, and came over to the crib where her son was laying. She started to console him when the nurse walked in. The mom said, "oh good, you're here," and laid back down in her bed, leaving her baby crying in the crib. The nurse and I looked at each other like, "what the heck?" and then the mom said, "I think he's in pain. Can you give him some morphine or something? Thanks." And then literally rolled so her back was facing us. I've never met someone more put out by her own child, and this is L.A.

Luckily for me, my mom and Mike came at 7 am so I was able to get a solid hour of sleep before all the fun started. At 8 am, Mr. 5 O'clock from the pulmonary lab came in to get Maddie's monitor. He said it would take at least an hour to download the night's results. We kept our fingers crossed that he didn't have anywhere to go. When a resident finally came by to tell us the results, we were really antsy. She said, "the results were abnormal. The doctor will be by to speak with you," and then she walked out. Seriously, I am going to start a clinic for improving bedside manner. So many residents lack tact.

Dr. Lung came in and said that Maddie's oxygenation study showed that when she sleeps, she dips into the 80's. since we want her to be above 90, that's not good. I questioned the results, since the monitor Maddie was on would sound an alarm whenever Maddie's blood oxygen level hit 90. Dr. Lung said that the monitor was super sensitive and picked up things the alarm wouldn't have. What.Ever. She said that she wanted Maddie to be on oxygen when she sleeps at night, and that she was going to order home oxygen for Maddie as soon as she left our room. We scheduled follow up appointments with the pediatrician (loooove) and Dr. Lung for tomorrow and next week, respectively. Then we waited for the resident to discharge us. That always takes forever. The SECOND they told us we could leave, we grabbed our things and ran. Oh, and we grabbed Maddie, too.

When we got home, Mike told me to listen to the answering machine messages from yesterday. There was a message from a home medical supply company asking me to call back. I assumed they were calling about the nebulizer equipment that we rent from them, since they check in from time to time. When I called, they asked for confirmation of our address and insurance information, and told me that Maddie's oxygen tank would arrive sometime today. I asked about the message from the day before, and the woman said that the only reason she was calling was because of the oxygen. And then it occurred to me - Dr. Lung ordered Maddie's oxygen yesterday, BEFORE Maddie's oxygen study. That deceptive beeyotch!

I've been trying not to get mad about this. I know that Dr. Lung is one of the best pediatric pulmonologists around. I just wish she was more forthcoming. If she'd just said, "Maddie is small, she has BPD and possibly chILD, and I would feel better if she was on oxygen at night," I would have accepted that. I don't know, maybe I have created this relationship with her by questioning everything she says. On the other hand, if I didn't ask what she was doing, what kind of parent would I be? I guess I just have to make sure I ask in a better way, maybe less accusatory. We're on the same team and all of that.

We were pretty much stuck at home waiting for her oxygen tank to arrive. Not that we would have been going to a theme park with her or anything. We were expecting small tanks on wheels, but instead the delivery man wheeled in a HUGE tank, at least five feet tall. It has to be in a permanent stand, so we set it up in Maddie's room. That means she will be sleeping in her own crib from now on. Mike and I don't really feel ready for this, but she was getting a little too tall to sleep in the bassinet anyway. I have a feeling one of us will be sleeping on the floor in her room. The helicopter parenting has already started!

I'm not President of the Dr. Lung fan club

The Upper GI today showed what I already knew - Maddie doesn't have any fissures between her trachea and esophagus, so reflux is extremely unlikely. But try telling that to Dr. Lung. She said, "well, this was just a snap shot. I would like her to have a pH probe in the future." I'm thinking we'll probably decline that. It's just not an issue for her. Hopefully she'll forget that idea.

We managed to keep Maddie pretty calm until the procedure. When we were in the dungeon of the hospital, she woke up and started to get that look on her face like, "where the hell am I, and where is my food?" Unfortunately for the GI team, that was when the procedure started, so she cried pretty much the whole time. The only time she was quiet was when she was drinking the barium. I couldn't believe she drank it, but she gobbled it down. We were able to be there with her on the other side of a window (because of the radiation), and we could watch the screen to see the movement of the barium through her esophagus into her stomach. There was a med student explaining it all to us so it was pretty cool.

Dr. Lung came by later in the afternoon, and that's when she told us everything was normal with the GI screen. She then said that since Maddie had, at that point, been off oxygen for over 24 hours, she was leaning more toward a diagnosis of Bronchopulmonary Dysplasia (BPD). Or, as she said, "severe, severe, severe BPD." Wow, is that the medical term? Severe, severe, severe? Jeez. She is going to monitor Maddie for the next few months and then decide if she needs a lung tissue biopsy.

With the test results coming back in our favor, we figured Maddie would be in the clear for discharge today. She hasn't needed oxygen since noon on Tuesday, and she was disconnected from the pulse oxygen monitor. The nurses even said that they thought she'd be discharged. Dr. Lung had other plans, though. She came in and said she wanted to have a night of Maddie on a - again, her medical term - super fancy pulse ox monitor, to make sure that she wouldn't need oxygen at home. When we pointed out that Maddie had been on a monitor last night without oxygen, she told us that the monitor wasn't sensitive enough. I asked about home monitoring, and she said that it would take our insurance a day or two to authorize that, so we should just do the overnight in the hospital. Thinking about it now, I can't imagine that an insurance company would pick staying in the hospital over home monitoring if given a choice.

After I relented to Maddie staying in another night, a man from the Pulmonary Lab came into the room and started fiddling with Maddie's monitor. I asked him what he was doing, and he said he was zeroing out the monitor for the overnight study. I said, "I thought you were bringing in a new monitor" and he said, "oh, I don't need to since this room already has one." Alarm bells started going off in my head and I said, "don't zero that one out!!! She's been on it since she got here and she wasn't on oxygen last night!!!" When the lab guy heard that he said he would take the data and page the doctor. Victory! We started planning our escape from the joint. Our roommate's mom was so inspired she started agitating to leave, too. The lab guy said it would take a few hours to download all the data as it records down to the second. Fine, a few hours is nothing compared to another night.

The lab guy came back a little after five and said that the data was inconclusive and that the doctor was coming. He quickly re-attached the monitor and left the room, saying Dr. Lung would be able to tell us more. When she came in, I demanded some answers. She hemmed and hawed a bit, saying that the data would be finished downloading tomorrow at 7:30. The lab guy had only managed to download the data up to April 27th, when she was still on oxygen. I didn't understand how it would take another twelve hours to download two days worth of data, and then my mom realized that the reason it wasn't going to be downloaded was because it was 5 o'clock - time for him to go home. I was livid when I realized that because this man wanted to go home, it was preventing us from doing the same.

I was ready to take Maddie and leave, but Dr. Lung talked me off the ledge. She rightfully pointed out that if Maddie needed oxygen at home, we could get her the equipment in an hour as a patient. As an outpatient, it could take days or even a week. She then swore that we would be out of the hospital by 10 am tomorrow. I still don't believe it. This place has a way of grabbing hold and not letting go.

Our roommate's parents had much better luck. We got along so well with them in our time here, they were ideal people to spend such close quarters with. When the mom heard we might go home she was terrified of being here with someone else - they'd previously roomed with a crack baby. No joke. Her son didn't have any other tests scheduled until the end of the week, so she started pushing for them to be done outpatient. This mom is amazing. She doesn't let anyone disturb her baby. She demands answers for everything and she gets them. She has totally been my kick-ass mommy role model! So of course, she got her son discharged. I know we'll stay in touch, but I miss them already! Now I sit here with a new baby who was just brought over from the pediatric ICU. His head is wrapped in bandages, like he had surgery. This place is so crazy, we have to get out of here.

A few minutes ago, Maddie had a breathing treatment from a Respiratory Therapist that knew us from the NICU. He was there the night she was born, and couldn't believe how great she looked. He told me that no one expected her to make it through the first night. I like knowing that she is a miracle, but it's hard to hear stuff like that when we are still in a hospital setting. I told him to tell me that again in a few years, when we are at a NICU reunion and she is running around playing.

so many acronyms, too little time

The CT scan went well this morning. I was really nervous about her not eating for an extended period of time, but her night nurse did a great job of helping me make sure Maddie ate at the last possible moments. It was a bit of fiasco getting her down to the CT area. They insisted on bringing her crib down, and tried to get me to lay her in the crib for transport. I knew if I laid her down she would get fussy and that wouldn't be a good way for her to go into a procedure where she had to be sedated. So I just told the transport orderlies that I was carrying her, and that was that.

All the different x-ray type machines are in the bowels of the hospital, or as our roommate's mother says, THE DUNGEON. We ended up having to wait a little while for the machine, which was annoying, but luckily for everyone involved Maddie stayed happy the whole time. When it was finally her turn, I laid her down in the big machine. It was huge:

She looked soooo tiny on the end of it! Do you see those straps hanging off the side? Well, they couldn't be used because a strap would have covered her entire body.

The anesthesiologists were great. There was a possibility that she might have needed to be put on a ventilator, but they made sure that didn't have to happen. Maddie didn't seem bothered by the experience, except for right when they put her under. The anesthesiologist said that one of the drugs would sting a bit as it went in her IV, and she definitely whimpered as it was pushed into her bloodstream. It was so sad. Luckily, she woke up about 10 minutes after the scan was over, smiling and looking for food.

Dr. Lung was there for the scan, which was really surprising. She looked at the scans right away, and then told us that she needed to think about it. After some thought, she laid it out for us. It looks like Maddie either has something called Bronchopulmonary Dysplasia (BPD) or Children's Interstitial Lung Disease (chILD). I'm just going to nutshell these here. BPD involves abnormal development of lung tissue. It is characterized by inflammation and scarring in the lungs. It develops most often in premature babies, who are born with underdeveloped lungs. Most kids outgrow BPD. chILD (and seriously, isn't that just the most darling acronym) is a group of rare lung diseases found in infants, children, and adolescents. There are different types of chILD that vary in their severity and in their long term outcomes. I don't know if kids outgrow this or not. The only way it can officially be diagnosed is through a biopsy of the lung tissue. Anyone can get chILD, not just premature babies.

I really haven't done a lot of research on either of these. I knew that she was a candidate for BPD; in fact, it is listed on her discharge papers from the NICU as "suspected." As far as the chILD goes, there are a lot of different kinds and severities, so I am not going to get too worked up about it yet. I'm mostly going to stay away from Google other than to familiarize myself with the terms Dr. Lung will use when she talks to us about it all tomorrow.

Her Upper GI series is still on for tomorrow. Dr. Lung still wants to rule out reflux. After spending the last four days with our roommate and his terrible reflux, I am certain reflux isn't an issue for Maddie. The Internets do tell me that ruling out reflux is important when trying to diagnose chILD, so I will go along with the test. It supposedly isn't that bad as far as tests go, but I'll believe it when I see it. A lung tissue biopsy, however, is surgery. If Dr. Lung decides to proceed with the chILD diagnosis, then we will schedule the biopsy. I don't know if it would be ASAP or if we'd schedule it outpatient. If it can't be done by Friday, I want Maddie out of there. She's been off oxygen since noon, and that is always the biggest factor keeping her in the hospital. The longer she's in there, the more likely she is to catch something new.

I came pretty close to hitting my wall today. It's that same trap I think everyone falls into when they have a lot of stuff going on. I am so consumed by everything that I'm not getting enough sleep, and all I can think about is Maddie and what is going on with her. I had a small breakdown when I spoke on the phone with Human Resources at work. Everyone there is so supportive but I feel like I'm being pulled in a lot of different directions. I'm hopeful that tomorrow we'll have a course of action in place, and that will help me feel like things are more under control and I can relax. All this unknown stuff doesn't sit well with a control freak like me!!!

I really do have all this funny stuff to say. Maybe if I didn't wait until 11:50 at night to write my blog I would have the energy! Here's to tomorrow being a better, funnier day!

Every time I mention cystic fibrosis, take a shot.

Maddie just had an IV inserted in her right arm. She cried and whimpered the whole time and it about broke my heart. Now she is sleeping so deeply I think the USC Marching band could come through and she wouldn't notice. Just another mommy scar that I will throw in her face when she's an ungrateful teenager.

The IV is for her CT scan tomorrow morning. This is the test she has to be sedated for, because it's imperative that she not move so the docs can get a clear picture of her lungs. She can't have any formula for four hours before the scan, so from 4 am to 8:30 am she will be cruising on an empty stomach. I can give her pedialyte from 4 to 6 but something tells me that isn't going to cut it. I can already predict what will happen - she will be STARVING after the scan, and she'll wolf down her food so fast that she will throw it all back up, and then the doctors will start the reflux talk in earnest. Let's hope I'm wrong.

She had a bunch of blood drawn for tests this morning. One test is checking to see if she has an allergy to the formula she gets. Another pointless test. The other tests were, I'm told, the usual work up. And then there was the blood taken for the...CYSTIC FIBROSIS TEST! Yep, they are testing her for it for the THIRD TIME! When Dr. Lung told me that, I almost slapped her. She said that the first two tests Maddie got didn't test for all the different mutations of the CF gene, just the most common ones. I'm so frustrated with this. All my reading says that in order for a person to get CF, both parents have to carry the CF gene (you can carry the gene and not have CF). I don't have it. I just don't understand how Maddie could. Seriously, if someone out there reading this can explain it to me, please do.

I feel like they are determined to diagnose her with this. Dr. Lung brought by a CF nurse today on the sly. She introduced her by saying, "this is Nurse Blah, who works in my office." She didn't say she was a CF nurse, we only found out because we heard her introduced that way in the hall outside Maddie's room after she left. It's so frustrating because of COURSE if she has CF, we want to know so we can get her the best treatment possible. But this isn't some willy-nilly virus we're talking about here. It's a disease that would kill her before her 30th birthday. That is why we don't refuse the tests.

There's something wrong that I have been driven to the point that I don't want Maddie to have CF not because it is fatal, but because I don't want these people to be right. That's some health care system we have here.

With all this crap I forgot to mention some other, much happier things. Maddie's grandparents, aunt, uncle, and cousins are all here from Northern California. It sucks that her aunt and uncle have only seen her in the hospital, and it makes me sooo sad that Maddie hasn't met her cousins. Her oldest cousin is three and half and he keeps asking when he will get to meet Madeline. They will be here until the end of the week so we have our fingers crossed that she'll be out of the hospital by then. Wait, this is supposed to be happy stuff!! Well, Maddie has been thrilled to see her family. She smiles away when they come in the room. Even if the surroundings aren't ideal, it is still nice that they can see her happy.

I bought Maddie a Bumbo seat when I went on my Great Target Spending Spree last week, so I brought it in today. I sat her in it, fully expecting her to cry or fall over, but to my delight, she really worked her stomach muscles and sat up in her chair for about five minutes. It was so cute, and, of course, she smiled the whole time. I'm glad I bought it.

Best for last - she has started laughing!!! Yesterday I was playing with her and she got a big grin on her face and then giggled. It was the best sound in the world! I kept playing with her and I got a bunch of giggles out of her, so I know it wasn't a fluke. Her uncle got a laugh out of her today, too. I'm so glad I have this little baby that can still be happy despite getting stuck with needles and squeezed with cuffs. I try to follow her lead.

Keep your fingers crossed tomorrow at 8:30 am that Maddie's CT Scan goes well!!!

Introducing Dr. Lung

We finally met the elusive Dr. Lung. She introduced herself and listened to Maddie, and then said that she wants to give Maddie a full work-up so she can get to know her anatomy. She is going to get a CT scan to completely rule out pneumonia, and it will also show the structure of her lungs in great detail. She'll have to be sedated for this, which is kind of scary but makes sense - you can't tell a baby not to move for a scan. Maddie has ruined many x-rays by wiggling around. She's also going to get an Upper GI test to examine her esophagus to see if there is a tiny perforation that is allowing food to get into her airway. Once these tests are done, Dr. Lung thinks she will be able to better diagnose Maddie's problem. These two tests will be performed on Tuesday. Good thing Maddie was transferred to Westwood in such a hurry. Not.

Really, though, the best part of the day was when we asked Dr. Lung when she was going to get the suctioning procedure that we transferred specifically to Westwood to get, and Dr. Lung said, "oh, she is too small for the suctioning procedure." Um, WHAT?! When we pressed her she backtracked a bit, and said that she actually couldn't say for sure if Maddie was too small and that the CT and Upper GI would tell her whether or not this was the case. If she doesn't get that damn suctioning procedure, I. Will. Be. Livid.

Sharing a room is really, really hard. The people we are sharing a room with are AWESOME, so I can't even imagine how bad it would be if we didn't like the family. The other patient in Maddie's room is an 11-week old baby who is dealing with terrible reflux. His mom stayed with him last night, and she really is the nicest woman who I have a ton in common with. But the rooms are small and cramped and you are right on top of each other. Last night when Maddie made noise or if one of her alarms went off, I was instantly quieting her down so she wouldn't disturb our roommates. Normally she self-soothes, but she's noisy and I didn't want to wake up the other baby. I'm sure his mom felt the same way when his alarms went off, too...especially since I would jump up every time an alarm went off, thinking it was Maddie's! There isn't a bathroom, so if you need to use one you have to go down the hall. My favorite part, though, is that they don't stock the very common anti-reflux formula that Maddie uses so we have to bring our own from home. YET, they are still charging my insurance for food for her! Ridiculous.

Tomorrow Maddie's pediatrician (loooove) is really going to have to earn the (loooove) that I give her when she comes to check in on us. We really don't want to be in the run down Westwood hospital longer than necessary, and we're even willing to bring her home on oxygen to get her out of there. I just know she is going to catch something much worse than a small cold if she's there for too long. It's so sad, there are kids on the floor with terrible illnesses. Obviously she isn't going to catch cancer or reflux, but she could definitely catch pneumonia or measles or one of the other millions of things on the floor.

Tomorrow I will go more into depth about the hospital, like why such a renowned facility is practically in disrepair, the comedy that is the cafeteria, and how night & day the Pediatric floor is from the NICU. But for now I must sleep, and try not to think about how I am separated from Maddie. Mike is staying with her tonight, and since only one parent can sleep in the room, I am at home. It's our first night apart since we brought her home. Tear.

Maddie Marches Down Wilshire Blvd

Today I walked five miles and my daughter was transferred to a different hospital. I know you think both of those things are lies since I a) abhor exercise, and b) Maddie has been on the brink of transfer every day, but today both actually happened!

We started the day by attending the March for Babies in Griffith Park. Mike and I, along with 15 awesome friends and family members, walked five miles to raise money and awareness for the March of Dimes' fight against prematurity. I was the captain of our family team, "March for Maddie." We raised over $2,500 (and we're still going) and I was so, so proud to turn in all that money in Maddie's name. My friends in San Francisco raised an additional $1,800 in honor of Maddie. I have the best friends in the world. There aren't too many people that would hassle their families and coworkers for donations, not to mention getting up at the crack of dawn for a five mile walk in 90 degree heat!

Each family team had a quilt square to decorate and turn in. My brother was in charge of our square and this is what he came up with:

He drew that! He's available for your birthday parties and bar mitsvahs. All March for Maddie walkers also got a pin with Maddie's face on it. Free Maddie swag! Mike and I were sad that she wasn't at the walk, but we are looking forward to participating every year - next year she should even be able to walk a bit on her own!

After the walk and lunch with everyone, Mike and I headed back to the hospital. My mom had stayed with Maddie for the morning so we could participate, and she'd been told that the transfer to the Westwood hospital was officially happening. We didn't really believe it, since we'd been told that before. We were jerked around a bit today, too. First they told us that a NICU team would have to come get her. Then there wasn't a UCLA ambulence available. THEN we were told that our insurance wouldn't cover a private ambulence, which wasn't true. If you were following my status updates, you saw that even when Maddie and I were in the ambulence, I still didn't believe we were going to make it to Westwood! But we did. And here we are.

She is sharing a room. When we first got here her roommate was a two year old boy. He was moved to another room, and now her roommate is a little baby. He looks pretty fresh, although he couldn't be THAT new or he'd be in the NICU. I have a very interesting fold out chair that, if I didn't have my foam pad, would probably be unbearable. I will rate it in the morning. The only doctors to see her so far have been residents. Tomorrow her pediatrician (loooooove) will be by, as well as the ever-elusive Dr. Lung. We'll see if she gets her procedure tomorrow. I doubt it, but you never know.

Three of Maddie's NICU nurses have been by to see her and it was SO great to see them!!! Her overnight nurse has already offered to take over one of Maddie's nighttime feedings so I can get some sleep, which I thought was above and beyond. I might have to take her up on it!!! It's not every day you have someone who is willing to feed your child at 2:30 in the morning. Oh wait! I have one of those every day, his name is Mike.

The Wheels Are Square

Mike called me this morning at work to tell me that the decision had been made, and Maddie was going to be transferred to the Westwood hospital and that her lung procedure was going to be today. He said he was told that it would happen in a few hours, so I didn't have to rush, but I should get there soon. I quickly wrapped up my loose ends at work, made arrangements for my co-workers to help me with clients, and left for the hospital. A parent has to ride with Maddie during the transfer and I called dibs on all ambulance rides. I want the siren.

When I arrived at the hospital, my parents were in Maddie's room. Mike had been in her room for over 48 hours straight so he needed to go home and hose himself off. My mom and I gathered up Maddie's things, and then we settled down to wait for the transfer. The Westwood hospital called Maddie's room to finalize details with me, and they said that the transfer was going to happen in a few hours. Sweet, still on track. I emailed all of my nurse friends at the other hospital to let them know we were coming. We were ready. Then Maddie's nurse came in and told us no beds had opened in Westwood, so the transfer wasn't going through today.

I wasn't pleased.

I told the nurse that the Westwood hospital had called and said that everything was still on track. She was confused and said she would figure out what the deal was, since we were being told different things. When she was gone, Maddie and I sat there and put hexes on the stupid hospital administration. Why tell us she's getting transferred when there is a possibility she might not be? Predictably, Maddie's nurse came back and said that the transfer definitely wasn't happening today, but that it was on for tomorrow. When I asked what was to prevent the same thing from happening tomorrow, she said, "nothing." GOODY. Why do I have a feeling she won't get transferred until next week? My boss is going to love all the work I'm going to miss.

I don't think I've explained WHY she needs to be transferred, mostly because it was really just explained to me - and not very well, as you will soon see. Maddie is in the UCLA medical system. Since she was in the NICU at the main teaching hospital in Westwood, Mike and I decided that for all her future care we would stay within the system. That way her medical history would be easily accessible for anyone who treats her. Of course, that means they actually have to LOOK AT IT instead of asking me for the 800th time if she has been tested for cystic fibrosis, but at least the tools are there. Mike and I were under the impression that all doctors in the UCLA system had privileges at the Westwood AND Santa Monica hospitals. Apparently this is not the case. It seems silly to me since the two hospitals are 3.8 miles apart. The pediatric pulmonologist (who I am going to start calling Dr. Lung because typing "pulmonologist" makes me tired) only has privileges at the Westwood campus. She is there, so Maddie must go there. I am glad Maddie's pediatrician (looooooove) has privileges at both hospitals.

I am not glad we are going to the hospital in Westwood, despite our familiarity with the place and the friends we have there. It is old and the parking there blows, and it is a whole 0.2 miles further from our house. At least the cafeteria is better. Maddie most likely won't have her own room, which means only one person can sleep over at night. That is going to be hard. I'm keeping my fingers crossed that she gets a rare private room, but I'm not holding my breath. The Westwood hospital is also MUCH more intense - the whole pediatric floor is like an intensive care unit. It's likely that her roommate will be a VERY ill child. I'm kind of dreading that. I've had my fill of sick kiddos.

Tomorrow morning is the March for Babies. We're bummed that Maddie (and my mom, who is staying with her) won't be there, but her repeat hospitalizations have strengthened our resolve to volunteer with the March of Dimes. All these problems have been caused by her prematurity. Hopefully we can help another baby avoid all of this madness!!!

The wheels are in motion

Maddie is going to be transferred to the Westwood hospital. I will keep you all posted through the magic of blackberry email posting!

I ate my deodorant.

This morning I had a banana for breakfast. About 20 minutes later I was at the bathroom mirror and I noticed a chunk of white on the collar of my shirt. Looking at my reflection, I picked the chunk off my shirt and put it in my mouth...and realized the white gob wasn't banana, but deodorant. Expecting something delicious and getting something toxic. That about sums up my day.

Today the residents came out in droves, eager to explain the conclusions they had come to with the pulmonologist. The first thing that was determined is Maddie is too small for a bronchoscopy. Her little windpipe and lungs just won't accommodate the bronchoscope. I'm glad that was decided BEFORE they tried to give her one. Because of this, a bunch of treatments were prescribed today. The latest x-ray showed no improvement, with some "areas of interest" in her left lung. The antibiotic azithromycin was prescribed to combat possible pneumonia. The x-ray also showed that her mucus plugs are moving throughout her lungs, causing new areas of collapse. They also want to make sure she doesn't spit up and inhale it, so she has been started on reglan and protonix again. Tomorrow, if the next x-ray shows no improvement after 24 hours of antibiotics, she will be transferred to the Westwood hospital, where she will be sedated and undergo an invasive suctioning procedure on her lungs.

And the pulmonologist wants to test her for cystic fibrosis.

I'm sick of going in circles about CF. She had the newborn screen and genetic testing in the NICU, and I was tested for the gene when I was pregnant. Everything came back negative. Now the pulmonologist wants to do a sweat test. I thought we were done with this but we keep getting sucked back in. How many tests have to be done before we can put this to bed, one way or the other?

I am so tired. We all are. It's really difficult for me to go to work when my heart and mind are in the hospital with Madeline. I'm having a hard time putting on a happy face. Today I was sitting at my desk, staring blankly at another stupid email (how much for seats in the middle?), when a coworker passed by and said off-hand, "It's not that bad Heather." I wanted to stand up and say, actually it IS that bad. My baby is in the hospital AGAIN. We don't know what is wrong with her. She's spent more time IN the hospital than OUT. But I didn't say these things because he didn't know what was going on. For all he knew, I was upset about the sports page. I don't talk about any of this unless someone asks. And, if I'm being honest here, I usually lie. I know asking how the baby is is a formality, they don't really want to know that she's in the hospital again. So I put that happy face on and say, "oh, she's hanging in there. Keeping me up at night!"

When I was first put on bed rest I would send out emails all the time about my latest progress. But then when I would think about it (and you have plenty of time to think when you're on bed rest), I felt like I was hassling people with my problems. So I slowly stopped sending them. Last time Maddie was hospitalized I sent a text message to a few people, and this time I didn't do anything. Everyone has their own problems so why should I force them to think about mine? I don't want anyone to be put in the position where they feel like their problems aren't as bad as my problems. It isn't a contest, you know? But people can't help but compare. I know someone who was recently diagnosed with cancer. We were talking about her chemo and everything she's going through, and then she said, "well, your baby is in the hospital, that's harder." I didn't even know what to say at first, I couldn't believe she was discounting her own feelings and experiences WITH CANCER. People always say, "it could be worse," and while of course it's true and appropriate to have perspective, those words shouldn't rob us of the feelings we are having at the time. But they do.

I'm passing the conch now.

Still Not Paroled

Early this morning at 2 am, Maddie's nurse managed to wean her off the oxygen she's been getting. When her Pediatrician (looooove) came this morning, she said that if Maddie's x-ray showed signs of improvement, she could go home and her bronchoscopy would be scheduled out-patient! Yay! While we were waiting for radiology and the pulmonologist to read the x-ray, Maddie's oxygen saturation started dipping into the 80's and the oxygen had to be turned back on. Then her x-ray didn't show much improvement. So, it was decided that she has to stay another night in the hospital, and there was no decision about the bronchoscopy. Boo. I don't know whether to be relieved that there isn't a lot of urgency so therefore things must not be too serious, or annoyed that everything is up in the air. Sigh.

Maddie has a really stuffy nose, so the nurses have been suctioning it every few hours. It's amazing how much stuff comes out...amazingly disgusting. I suppose it's no different than when you or I blow our noses, but it's weird to see it with a little baby. Her nose isn't that big!!!

I had dinner tonight with three of my friends, Dana, Brianne, and Lissa. I wasn't going to go but Mike insisted I spend some time away from the hospital for something other than work. It was really nice to eat yummy food and catch up with each other and gossip and get away for awhile. I'm so lucky I have such wonderful friends!

The USA Softball Team paid a visit to my work today. When I was a teenager I played on a travelling team with a girl (well, now she's a woman) who is now on the Olympic team. We hadn't seen each other since, oh, senior year in high school, so it was nice to catch up. It made me laugh when she said I had a cool job because, dude, her job is to travel the world playing softball! I would trade in a second. I'll be watching when she is in Beijing this year going for another gold medal, and I will be sure to remind everyone that the Olympian was good enough to play on a softball team with me!

Hospital Kicks

As I predicted, Maddie is still residing in room 5446. Luckily, her fever is gone - Tylenol is a miracle drug. Her Pediatrician (loooove) visited on rounds this morning and Maddie's morning x-ray showed that her collapsed lung still hasn't improved. The Pediatrician and the residents that follow her like ducklings (albeit very smart, adorable ducklings) decided to consult with the Pulmonologist. Their great meeting of the minds determined that Maddie needs to get Chest PT every two hours. The Internets tell me that the PT stands for Physiotherapy, but it might as well stand for Pound Thump. The nurses gave us a little plastic thing that is firm but has some give, and we have to beat on her chest and back with it...more cystic fibrosis treatments. Just to clear it up (because a resident asked me AGAIN today if she'd been tested), Maddie does NOT have cystic fibrosis. She's been tested twice for it, and I'm pretty sure that two negative tests mean she's in the clear.

Tomorrow Maddie will get another x-ray, and if her lung still shows no improvement, things will get interesting. Most likely, she will be scheduled for a bronchoscopy. A bronchoscopy is a procedure where a physician examines Maddie's respiratory system through a small, flexible tube that is passed through her nose. The flexible tube carries a fiber-optic system that attaches to a video camera and light source. The image from the open end is transmitted through the fiber-optic system to a video camera. Her Pediatrician told us that if they come across mucus plugs blocking her tiny airways, the bronchoscope would help dislodge them. Sounds like it would be a great procedure, but of course it makes us nervous. She'd have to be sedated for it. It can't be done in the Santa Monica hospital, so she'd have to be transferred to Westwood. Although, I don't know if it is something that would be done right away, or if it would be scheduled down the road. I guess we'll find out tomorrow.

When it became obvious that I'd be spending more time on the worst fold out bed in the world, I decided to go buy a foam memory pad. I went to Target. Oh, how I love Target. My old roomies Jackie and Bella and I used to have Target Sundays, where we would spend entire afternoons in the store, drinking slurpees and buying track pants and mascara. A new Target opened a few miles from my office and I could spend hours walking every inch of the three (THREE!) glorious stories it's comprised of. But oh, how I hate that you walk in to Target with the intention of spending $10.84 and walk out having spent $274.51!! Like we are made of money or something. First I saw a bumbo on sale. Then I saw a huge vat of the formula Maddie uses. Then they had packages of baby wipes for only $1.99! I grabbed four. I saw a couple pairs of shoes I could wear to work, a dress, some pants, a computer mouse, some lady products, leg warmers for Maddie, treats for Rigby, and OH YEAH the foam mattress pads! Since those were only $9.99 each I bought two! I need professional intervention.

Maddie's latest thing, which started BH (Before Hospitalization) is kicking off her blankets. At home, we swaddle her (although she is just about at her age limit for that) or put her in a sleep sack. The first time she tried to kick off her sleep sack and realized she couldn't, she got soooo pissed. She was crying but I refused to give in - victory! Our house is too cool for her to sleep without a blanket. Here in the hospital, we can't swaddle or sack her because of the probes and exams she gets throughout the day and night. The hospital is drafty and I worry about her getting cold since I freeze half the night (seriously, don't you want to stay here at the UCLA hotel? The beds, the drafts, oh my!), so when I was at Target I bought her leg warmers. They are exactly what I was looking for and they do the trick - she kicks and kicks and they don't come off. Victory!

Hospital Couture

Maddie wasn't discharged from the hospital today.

A care partner (a fancy term for nurse's assistant) brought in a bunch of blankets, towels, etc. for Maddie, and on the top of the pile was a little hospital scrub gown. It's really meant for a toddler, not a baby like Maddie. Here is a delightful, not at all odd, photo of a child wearing such a gown:

It was way too big for Maddie, but I was determined. I pulled out my inner Tim Gunn and I Made It Work.

I thought the scrub dress demonstrated that Maddie could look cute in anything, because the scrub dress? Not cute. The nurses, however, thought the scrub dress was the greatest thing since sliced bread. One even said I should go into clothing design - and she was serious!!! So consider the Scrub Dress my audition for Project Runway. Heidi, call me!

Anyway, last night when Maddie was sleeping, her oxygen saturation kept dipping into the 80's. She would eventually pull it back up above 91, but each time it fell it fell a little lower and it would take her a little longer to bounce back. After the saturation alarm went off a million times (SO lovely to wake up to - peaceful, like a fire alarm), the nurses decided to give her a little oxygen support. It was so low that they couldn't tell how much she was getting - probably an eighth of a liter per minute. As soon as they turned it on her saturation shot up to the high 90's. At that point, I knew she wasn't going to get discharged.

When her pediatrician came this morning (and, sidebar, I really have to think of a "blog name" for her), she confirmed my thinking. She also said that the area of collapse in her lower right lung had improved "marginally." Mike saw the x-ray that was taken this morning and gave us a description complete with props. He held out his hands, palms facing us. His left hand was open, and he closed his right into a fist. The open hand represented her healthy left lung at normal capacity (normal for her, that is), while his represented her right lung working at about half capacity. If an adult had a collapsed lung, there are a bunch of treatments we could do that involve blowing into tubes and the like. Obviously, a baby can't do that. So she is getting her two normal breathing treatments (xopenex and pulmicort) to help reduce the swelling in her lungs, and two treatments to help her dislodge some of the mucus that is plugging up her tiny airways (hypertonic saline and pulmozyme). The last two are primarily used as treatments for, you guessed it, cystic fibrosis! A constant theme in our lives.

Unfortunately, Maddie needed oxygen support for the majority of the day. And, in the last few hours, she has developed a fever and some tachycardia (rapid heart beat) of over 200 beats per minute. Her smiley face has been shelved - she is miserable. Crying, sweating, whimpering. It sucks. I really think that she has what I had last week. I felt kind of crappy the first couple of days, and then suddenly I felt TERRIBLE and could hardly move and had a fever. Poor little thing. I got her nurse a little while ago and she gave her some Tylenol, so hopefully that will help make her more comfortable.

I'm not a doctor (I just play one on the internet), but I don't think she'll be going home tomorrow, either.

Maddie's Hospitalized! Part the Third

It's time for another episode of "Maddie's In The Hospital!!!"

On Thursday and Friday Maddie threw up a few times. While she has stomach issues, she doesn't usually throw up multiple times a day two days in a row. So there was our first red flag. Then Friday night she started to get a familiar rattle in her chest. On Saturday morning when it wasn't better, we decided I would take her to the urgent care at her Pediatrician's office, just to be on the safe side.

We got to urgent care a little before two pm. There were only three people in front of us. Excellent. I settled down with the only magazine there that wasn't a coloring book and waited. I finished my magazine and started playing with my blackberry. I caught up on all my websites, I updated my facebook, I went over my schedule for the next few months. I fed Maddie, and rocked her back to sleep. HOURS went by. It wasn't like more urgent cases came in. The receptionist at the desk didn't ask anyone what was wrong, so there wasn't a ranking system of the most needy. Maddie gets a breathing treatment at three pm every day, and as that came came and went, her breathing got worse. I couldn't avoid the overlap, though, since the urgent care was only open for a few hours. Maddie was finally called back into the doctor's office at 4:15 pm.

The urgent care doc had me go over Maddie's history and was fascinated by everything. Maddie is medical porn to doctors! The UC doc gave Maddie an exam, then took her pulse ox level - only 76. At that point, I just KNEW she was going to be admitted. The UC doc told me to take Maddie back to Santa Monica UCLA Emergency Room for a chest x-ray and evaluation. Yipee.

I went back to the house to get Mike and packed an overnight bag for myself and Maddie. We gave her a breathing treatment, and then went to the ER. On the way there, I cancelled our evening plans - my cousin Leah was going to babysit Maddie while Mike and I went to a party in honor of our friend Brianne's birthday. Sigh. At the ER, we were called into triage right away, and then immediately put in a room. I was much more pleased with how quickly Maddie was attended to. At least, I was at the time. The ER doc (who looked more like Doogie Howser than Doug Ross) came in and I went over Maddie's whole history again. He noticed that Maddie's breathing rate was up, and that she was really pulling with her stomach when she breathed in. We told him that he normally works a lot harder than your average kid to breathe, and we were backed up by Maddie's well-developed ab muscles. She has a six pack! The doctor decided to give her breathing treatments of xopenex and albuterol, and ordered oral steroids, blood cultures, urine cultures, a nasal cannula, and a chest x-ray.

Most of the nurses we've come across are not comfortable drawing blood from a baby as small as Maddie. She doesn't have any real prominent veins, and she requires a needle much smaller than any they have ever dealt with. Unless they are a pediatric nurse or NICU nurse, of course! the nurse that drew her blood in the ER was so determined to get the perfect vein. He spent 20 minutes looking for a vein before he settled on one in her foot. It took another nurse, a respiratory therapist, and me to hold Maddie down when he drew her blood, she was that pissed off. Unfortunately, the blood draw in her foot didn't work, so we had to hold her down again for a draw from her hand. Poor little thing cried so hard, it about broke my heart.

The ER doc came back in to talk to us at about 8, after we'd been there for about two and a half hours. He said that her oxygen levels and everything else looked good, so he was going to leave it up to us whether or not we wanted to have her admitted. Mike and I were like, um, YOU are the doctor, shouldn't that be your decision? And then the doc said, "well, when I look at her, I freak out, but you two know her since you're her parents." Um you FREAK OUT? Thanks for the wonderful bedside manner! When we asked him to elaborate, he said that he meant that in a baby that didn't have Maddie's history, he would have been extremely alarmed by her oxygen levels (in the low 90's), respiratory rate (over sixty breaths per minute), and her retractions (how hard she had to pull with her stomach muscles to fill her lungs with air). I asked him how her chest x-ray looked, and he said, "oh yeah, I forgot about that. Let me go look at it." Nice.

When he was gone, Mike and I talked and decided that, unless her x-ray said something crazy, we were going to take her home. Of course, when the doctor came back, her x-ray said something crazy. The lower left part of her lung was collapsed. So the decision to admit her was made for us. It was 8:30. We were told that it would take about two hours for her to be admitted. A silly amount of time, but we could deal. I signed the admitting paperwork while Mike got us food from the deli across the street, and then we waited.

At 9:15 a pediatrics resident came down to examine Maddie. We'd met her the last time we were here. She told us that the pediatrics floor had been a bit crazy with a code and a transfer, but things had calmed down and we would be up shortly, especially since the peds unit had just added a bunch of beds. Around 11, we asked the nurse what was up. She said that they were just waiting for Maddie's room to be cleaned and sterilized by housekeeping, and that it wouldn't be much longer. At midnight, we were told that our nurse had been "yelled at" by the charge nurse on the pediatrics floor because she'd been calling too much. Whatever! At one, I was flipping out. Another nurse said, "they're just looking for a room for her." Um, what about the room that was being cleaned for her at 11? He didn't know.

At 2 am, we'd HAD.IT. I told Mike that we were leaving. That if they didn't have a bed for her in the next 15 minutes we were just going to come back in the morning. Mike managed to talk me off the ledge for a while, but by 2:30, even he'd had enough. He went out and found the nurse that had drawn her blood some SEVEN HOURS earlier. I could hear them talking out in the hall but I couldn't quite make out what they were saying. I started yelling, "It's been over six hours since she was admitted!" and "I WANT THE CHARGE NURSE"! Well, turns out Nurse Pokey IS the charge nurse in the ER. I'm sure he was thrilled to speak with the crazy tired mom. Luckily Mike was more rational. He pointed out to the nurse that Maddie was laying on an adult bed where the rails weren't close enough together to prevent her from falling. We were too tired to hold her safely. Nurse Pokey looked at him, then at me. I started crying, "We're just so TIRED and we've been here FOREVER and I know it's not your fault but you have to understand where we're coming from! We are just going to take her home and come back in the morning!" He told us not to leave and that he'd go call the nursing supervisor to find out what was going on.

Wouldn't you know, fifteen minutes later we were being taken up to Maddie's room.

I sent Mike home to take poor Rigby out to the bathroom. The nurse brought me a roll away bed and I laid down, hoping to get some sleep. Wishful thinking! Nurses were in and out. Maddie woke up every hour hungry, only to fall asleep after only eating about an ounce. Her pulse ox alarm would go off, then the monitor started beeping because it was low battery. The x-ray team came in to get another picture of her chest. She needed blood drawn. In all, I got about an hour and a half of sleep.

Maddie's amazing pediatrician came by at about 10:30 and we told her everything that had happened the day before. She was horrified by how long it had taken for Maddie to get a room. She was also the voice of reason, cancelling all orders for blood draws and other unnecessary treatments. She examined Maddie and said that while her lungs sounded really junky and full of phlegm, she seemed MUCH better than the last time she was in the hospital. Her x-ray showed that the area of collapse had slightly improved. And then she said the magic words, "if she doesn't have any other problems, she'll go home tomorrow." Great to hear, but we'll believe it when she's in the car on her way home.

She's been on and off oxygen through her cannula, but mostly off. Right now her oxygen levels are in the low 90's with no oxygen, which is normal for her. Through it all, Maddie has been her usual happy self. She is eating like a champ (not gaining any weight though, grrr) and is, of course, smiling at everyone she sees. We're so glad that even with her coughs, sneezes, and wheezes, she is still our spirited little girl.

Guess who is back in the hospital?

Yep. I'll write more when it isn't, you know, three thirteen AM. This has been the urgent care/er/pediatrics visit from hell.

Joy of Joys and Baby Boys

I was driving to the hospital yesterday when my phone rang. Mike was on the other end.

Mike: Hi! So...um...where are you right now?
Me: About seven minutes away! Almost there! ...why?
Mike: ....well....
Me: WHAT?! WHAT IS IT?!?! (having a mild heart attack)
Mike: Well, I was feeding Maddie, and the next thing I knew, she had pooped all over me!
Me: *silence*
Mike: So I'm just sitting here in a towel and I need you to get me some clothes from home!!!
Me: You're sitting there just in a towel? In her room? Did you ask the nurse for scrubs?
Mike: NO! I'm hiding from the nurses in the bathroom and none of them have come in yet!!! There's POOP EVERYWHERE!!! HURRY!!!!
Me: *uncontrollable laughter*

By the time I got there, a nurse had given him a pair of scrubs. He saved his pants and hoodie for me to see, and I think there was a pound of poop on his crotch. It was pretty gross. The antibiotic Maddie is taking gives her runny stool. Now when we hold her we wrap a burp rag around her bottom!

My mom stayed with Maddie and me last night (she stayed with me most nights and Mike and I are soooo grateful for all her help). I woke up at 3 am to, "Heather! Maddie has been off the oxygen for an hour!" I jumped up, thinking that she had pulled her cannula out of her nose. Then I almost fainted because I got up too fast, which is always a delightful feeling. Once I got my bearings, I realized my mom meant that the nurse had turned her oxygen OFF. Maddie's saturation was right at 100 on only 1/4 liter of oxygen, so her nurse decided to try her on nothing. When she was off, her sat level was anywhere from 88 - 100. When it dropped to 88, she pulled it back up into the 90's herself within a minute. At 4:30 am her nurse removed her cannula all together. Maddie barely stirred as the tape was being pulled from her face. She was too tired.

When her Pediatrician came in at 7:30, she said, "Maddie is doing better than I could have hoped!" She didn't think she'd be off the oxygen until the weekend. She examined her and then said, "okay! She can go home!" We were thrilled!!! We then started gathering our stuff. I'd been sleeping there for two weeks so I had a ton of my own stuff, let alone Maddie's stuff, some of Mike's stuff, and some of my mom's. Nothing is ever quick, though. After the Pediatrician decided she could be discharged, all the residents had to troop through and examine her, and the nurses, and the respiratory therapists. Not to mention the paperwork. Then, we had to go over all her medications and new breathing treatments. Finally, everyone had looked at her, the medications and treatments were set, the paperwork was done, and we could go! We said goodbye to all the wonderful nurses who took care of Maddie and then we blew that joint so fast there were cut outs of our bodies in the walls.

It's so nice to be home. Maddie immediately settled back into her usual routine of playing, swinging, and eating. When she napped, it was so glorious to lay on the couch! I'm so looking forward to climbing into my big, wonderful bed in a little while. Just as soon as this munchkin goes to sleep. Right now I'm too busy hugging her and kissing her tape-free cheeks.

In other really awesome news, my best friend Tara had a baby boy yesterday! Tara and I have been friends since we were two years old. We always planned on having babies at the same time so they would grow up as best friends, like we did. Mike always thought that was funny, but he clearly underestimated us. We are meticulous planners! Which is funny, because it sounds like we had such an easy time of getting pregnant. We like to tell our husbands that Maddie and her son are going to grow up and get married, simply because it freaks both of them out. In all actuality, they are going to grow up like brother and sister, which is exactly what we want. I'm so happy for Tara and her husband (and big sister Reilly!)...Tara and I both worked pretty hard for these babies and it's amazing that we now have full arms and hearts.

Oxygen and Other Necessary Things.

Maddie has been showing lots of signs of improvement. She is OVER laying in bed, and loves to be in a swing, just like at home. One of her nurses found a swing for her and she has a blast staring at the lights and fishies hanging around her. She is recognizing people and gives big smiles to anyone who comes in the room. I love getting those smiles!! She had blood drawn for lab work and slept right through it, I couldn't believe it. She is so tough.

Her Pediatrician is hopeful that she will be able to come home sometime in the next few days. We'll believe it when we see it, since this whole hospital stay was only supposed to be for a night or two. Two of her breathing treatments have been discontinued because her lungs sound so much better, so we're thrilled about that. Her antibiotics and lasix seem to be working. I don't know if she's going to have another chest x-ray or not. As always, it depends on who you're talking to.

The big thing today is getting her off the oxygen. Her Pediatrician thinks that she needs to be pushed, and I agree. If Maddie is on oxygen for too long, her body will start to rely on it and we don't want that. So her oxygen has been greatly reduced, down to 1/4 liter, and the hope is that she will be able to pull her blood oxygen levels up on her own. So far this has been met with limited success. We actually started with her completely off the oxygen, but her levels fell into the 70's, which is why she is now receiving a quarter liter. If she can tolerate a quarter liter today, maybe tomorrow she'll be on an eighth, and on Saturday she could possibly be completely off it. Otherwise, she'll be coming home on oxygen, which, while not ideal, is better than not home at all.